Myths, misconceptions interfere with Alzheimer's diagnosis, care

Last week, a senior living complex hosted a fair of services. In a large and beautiful common area information was available about a variety of amenities, programs, and services offered at the facility.

I noticed that while each table had a handful or more of residents chatting and inquiring with facility staff, one table drew little traffic. It displayed information for individuals and families dealing with dementia and Alzheimer's. Given that the average age in this residence was 85 that seemed odd. Or was it?

In the last blog, Dr. Smith wrote about the confusing jargon that surrounds memory loss and cognitive changes. He said that while a barrier to receiving an early and clear diagnosis can sometimes rest with the doctor or healthcare provider, it may also be fear on the part of some families to hear the "A" word. There's an Alzheimer's stigma.

The stigma is associated often with suffering, loss of mind, loss of independence and disability. The fear of this stigmatization may delay patients and their families from seeking a medical diagnosis — even as the symptoms become blatantly obvious. The word Alzheimer's can stir up such intense fear that it can inhibit any discussions of it with friends and even some family members.

With such a stigma, why diagnose? We all know that you can't make your loved one well once you have named the diagnosis. So here's my point: early diagnosis offers persons with the disease and their caregivers and families a chance at a better quality of life. If stigma makes a person with memory concerns resist seeing a doctor, then they're losing out on the benefits offered by timely treatments, therapies, and programs.

If stigma prevents caregivers from seeking support from family and friends, as well as formal services, then ultimately there can be additional negative outcomes for these caregivers — increased burden, stress, depression and physical illness. Research shows that without supportive services and programs for caregivers, premature nursing home placement for their relative with dementia increases.

As long as there is a stigma associated with Alzheimer's, people with the disease and their families will be far less likely to open up and seek help and support. Below are just a few of the most common and yet I feel detrimental myths and misconceptions about Alzheimer's still out there today:

Myth: Dementia and Alzheimer's is just normal aging. Stating that Alzheimer's is not a disease and that dementia is due to normal aging is irresponsible. There's no cure or prevention, but that doesn't mean we shouldn't diagnose and treat the symptoms, take full advantage of therapies and supportive services, and plan responsibly for the future. Not recognizing Alzheimer's as a disease keeps people feeling even more shame and isolation.

Misconception: People with Alzheimer's become agitated, violent and aggressive. No, not all people with Alzheimer's are agitated, violent or aggressive. The disease affects each person differently. Most often symptoms such as these are a result of the increased confusion and fear due to changes in the brain, as well as frustration from a decline in the person's ability to process information and communicate their needs verbally. By understanding the disease, caregivers and families can adapt their approach and methods of communication and prevent most negative behavior.

Misconception: People with Alzheimer's can't function, can't have a quality of life, and can't enjoy activities. Not true! People with the disease can live meaningful, active lives. They can achieve a renewed sense of purpose. Earlier diagnosis and medications are helping with this. People with early stage Alzheimer's want to get the message out that they're living with Alzheimer's, not dying from it. In the later stages of the disease, those with Alzheimer's who are treated as whole human beings in positive environments can still give and receive great love, participate in activities and share moments of joy and laughter.

As long as these and many other myths and misconceptions about Alzheimer's continue, Alzheimer's will carry a stigma. This means that many of those impacted will tend to hide and withdraw in shame, fear, and embarrassment. Somehow, some way, we need to break down the stereotypes and stigma.

Once we wholly understand and believe that individuals with the disease can maintain quality in their life well into the disease, and once we are open and honest about the disease itself, we can begin to change perceptions.

We could become a dementia compassionate community and society, taking dignified care of people with Alzheimer's (and related dementia) while embracing and accepting their families and caregivers.

There is a wonderful document called The Alzheimer's Disease Bill of Rights. It was drafted by Best Friends developers Virginia Bell and David Troxel. This bill of rights beautifully articulates the core principles every person diagnosed with Alzheimer's or a related disorder deserves:

To be informed of one's diagnosis

To have appropriate, ongoing medical care

To be productive in work and play for as long as possible

To be treated like an adult, not like a child

To have expressed feelings taken seriously

To be free from psychotropic medications, if possible

To live in a safe, structured, and predictable environment

To enjoy meaningful activities that fill each day

To be outdoors on a regular basis

To have physical contact, including hugging, caressing, and hand-holding

To be with individuals who know one's life story, including cultural and religious traditions

To be cared for by individuals who are well

Virginia Bell and David Troxel's book is one I highly recommend. It is called "A Dignified Life: The Best Friends Approach to Alzheimer's Care — A Guide for Family Caregivers." The book offers ways to bring dignity to the lives of both those who have Alzheimer's and those who care for them.

Although Alzheimer's disease develops differently for every individual, there are many common symptoms. Early symptoms are often mistakenly thought to be 'age-related' concerns, or manifestations of stress.[

Anna

July 12, 2012 7:13 a.m.

My mother has Alzheimers. While I agree that we need to have compassionate caregiving, there is no treatment for the disease at this time, and lets not pretend otherwise

Ellen

July 9, 2012 3:02 p.m.

I LOVE THIS!!! One of my personal goals is to spread the word about just what you are describing! EARLY DIAGNOSIS is KEY to quality of life!

Fran

July 5, 2012 6:35 a.m.

After caring for my husband with Alzheimer's for about 8 years, I've found that fear and stigma about the disease is still a huge issue. I believe in the importance of early diagnosis and talking about it with friends and family. I know many people simply do not want to know or believe there's no point, because nothing can be done. People also seem to believe that someone with Alzheimer's goes immediately into end-stage symptoms. It is possible to have a reasonable quality of life for many years, especially if medication is started early. I'm not trying to sugar-coat the disease or its effects on patients and caregivers, but avoiding a diagnosis and/or stigma from family and friends just makes it so much worse than it has to be.After caring for my husband with Alzheimer's for about 8 years, I've found that fear and stigma about the disease is still a huge issue. I believe in the importance of early diagnosis and talking about it with friends and family. I know many people simply do not want to know or believe there's no point, because nothing can be done. People also seem to believe that someone with Alzheimer's goes immediately into end-stage symptoms. It is possible to have a reasonable quality of life for many years, especially if medication is started early. I'm not trying to sugar-coat the disease or its effects on patients and caregivers, but avoiding a diagnosis and/or stigma from familAfter caring for my husband with Alzheimer's for about 8 years, I've found that fear

July 2, 2012 2:08 p.m.

I have been working with Alzheimer-diagnosed patients in the in-home healthcare field for &gt;30 years. As one gerontologist said, &quot;If it looks like Alzheimer's, we diagnose it Alzheimers.&quot; Most of my patients were not given a referral to a neurologist until I asked for it. Most of the time the patients had been misdiagnosed. There are over 70 reversible causes of dementia. I've made it my career to reverse dementia instead of watch a patient go downhill with medications that are totally inappropriate for someone who's dementia is caused by sleep-deprivation, anoxia, electrolyte imbalance, poor nutrition (anothr subject many Doctors have not received education for in Med School) and a host of other contributing causes. So, it is much more than just &quot;stigma&quot; that people are afraid of.

Angela

July 2, 2012 12:19 a.m.

why is it I can only find so few articles about studies being made to find a cure for AD? Is there to much money being made on this horrible sickness to justify a cure?

Lew

July 1, 2012 9:25 p.m.

Having cared for an Alzheimer's patient for about 6 yearsj(my husband) I thoroughly disagree with two points in Tha Alzheimer's Bill of Rights. The first is &quot;every person diagnosed with Alzheimer's or a related disorder&quot; 1. Has a right to be informed of ones diagnosis.&quot; I could not disagree more. Since nothing can be done to cure the disorder what good does it do for the patient to be informed of this? &quot;You have something wrong with your brain that will get worse and worse and cannot be cured. Explain possible progression. It will eventually kill you. Have a nice day.&quot; That is the diagnosis. What possible good does it do for the patient to be informed of that. How could anyone live any semblance of a normal life knowing that. It is hard, but I feel the caregiver must carry the burden of this knowledge alone (while sharing it with those who need to know so that they can give help and support).
2.&quot;To be free from psychotropic medications, if possible&quot; Advise on the type of medications one should take should be given by ones own physicians, not taken from something one reads online.
I have now had to put my husband in a facility that cares for Alzheimer's patients, he is hardly aware of where he is. The happy times we shared together after his first diagnosis (which were bittersweet for me) I feel was a gift of love that I gave him. He enjoyed them with unburdened happiness.

Donna

July 1, 2012 12:21 a.m.

Very true. Actually,it's human nature that we're so afraid of conditions like Alzheimer's.I have found that when I faced fully such possibilities occurring in my own or family's life,I was moved to take corrective action at several levels-including using my Nichiren Buddhist spirituality to offset the worst.Thanks

sanjit

June 29, 2012 12:17 p.m.

I was thrilled to see Virginia Bell's expertise mentioned in your excellent article ...especially because tomorrow June 30th is her 90TH BIRTHDAY ...and we are ALL so very fortunate that she has chosen to share her knowledge with loving care and joy in the later chapters of her life.
After raising five diverse and accomplished children with her minister husband, Wayne she returned in 1980s to Univ of Ky. to get an advanced degree and take on the challenge when there was almost no public knowledge of the disease and even less understanding. The Alzheimer's Association had just been started in Chicago by Jerry Stone a concerned husband with an affected wife and The Sanders Brown Center at U.K.(led by Dr. William Markesbery) was deep into the study and a hoped for cure which is still very much the case there and in many of the finest Medical Centers.
&quot; BEST FRIENDS&quot;came from the day care program Virginia founded. It started with one morning a week, now is full time with Virginia there as a volunteer when she is not speaking around the world. The SIX detailed books she and David Troxel have written have been translated into more than eight languages and carry the same concern for the loved one with the disease as for their caregiver.
A bit of information,hope, and love spread to the fringes of our world.
Yes, there truly is a Santa Claus!!! Her name is...
VIRGINIA!!!
HAPPY BIRTHDAY,LOVE and THANKS fro

Claire

June 29, 2012 11:40 a.m.

After caring for my husband with Alzheimer's for about 8 years, I've found that fear and stigma about the disease is still a huge issue. I believe in the importance of early diagnosis and talking about it with friends and family.
I know many people simply do not want to know or believe there's no point, because nothing can be done. People also seem to believe that someone with Alzheimer's goes immediately into end-stage symptoms. It is possible to have a reasonable quality of life for many years, especially if medication is started early. I'm not trying to sugar-coat the disease or its effects on patients and caregivers, but avoiding a diagnosis and/or stigma from family and friends just makes it so much worse than it has to be.

Sally

June 29, 2012 10:47 a.m.

Iwork together with the aide in taking care of this lady diagnosed with Alzheimer 10 yrs and 6 months ago.
I noticed the gradual changes, but before the alzheimer, she was already vicious. Now it's worst, she tried to strangle the aide, bite the aide, slapped and called her names. The aide has been changing leaving their job because they can't take the abuses. It is sad but it goes with her personality

Cory

June 29, 2012 6:31 a.m.

Linnie thank you for I have a loving husband but now he doesn't want to do anything and just sits and looks out the window, if he falls asleep in a chair and I suggest he sleep elsewhere he won't but starts in at 8PM wanting to go to sleep, does he know who I am, not really, but that doesn't matter as we both tell each other we love you, laugh and play peak-a-boo when he puts on a t-shirt, laughter is good medicine. He still doesn't like to take a hand held shower that I do but after wards tells me how good he feels. I have learned with each step of helping him to accept it and learn how to do. I have never shaved a man, cut his hair, wiped his bottom, tell him how to dress etc but I do as we love each other. He does get mad at me and tells me he is leaving and then later asks if he can stay as he likes this place, one night he even ask if he could sleep on the couch as it was dark and he wanted to go to Avondale and I said this is Avondale and he was so happy and then got into bed and I always cover him and tell him goodnight see you in the morning for breakfast. This is not an easy life as we have always done things together now I do all alone but know in my heart he would if he could. He takes no medicine as I think they hindered him and he did better without them. All at Church and family accept him and know that I take him to the toilet as he calls it, yes they stand watch if we are out someplace. Jesus is all I need to help me get through each day.

Dorothy

June 28, 2012 10:24 p.m.

A beautiful article! I want to comment on the piece that speaks to the fact that people with AD can continue to lead meaningful lives,love,and experience joy. I am a nurse and my husband's primary caregiver. We have been at living with AD for almost 9 years and are blessed inasmuch as we have been able to employ caregiver help -and the caregivers we employ have loving hearts. My husband is completely dependent, functionally. Yet, I am still in love with him as HE IS WITH ME. I treat him accordingly- always aiming to be loving and respectful-even in times when his behavior threatens to send me over the edge. No matter that he requires help with all of his physical needs and that he is out of touch with reality, that he often does not know that I am his wife, he continues to know he loves me and still kisses me as a husband does his wife. He recently suffered a hip fracture and is currently at a nursing facility for rehab. The experience there has been interesting inasmuch as he is far more functionally impaired than others on the Unit, yet much more verbally/socially intact. Just the way the disease affected him...perhaps? A function of how much love, attention, and respect he has enjoyed despite all? I want to think the latter, and want others to know that while living with AD is no picnic, neither is dealing with cancer, or the host of other difficulties life can bring. I believe AD is manageable if one can hang onto an attitude of gratitude, laugh and love.

Linnie

June 28, 2012 8:53 p.m.

My husband displayed symptoms for 4 years before being diagnosed with Alzheimer's at 59 years of age. He declined all offers of mediaction. We have been open about the diagnosis and with the support of our local Alzheimeer Assoc have a fully engaged &amp; active life. Bob walks the dog nearly 2 hours a day and looks after our property as well as a large bushland park. Many folk reacted to being told of Bob's diagnosis with surprise and disbelief but as Carole says they don't live in his head and nor do they live with him as I do. There is a prevailing attitude of dread, fear &amp; misunderstanding in the community. This article, as well as more of us being open about the good parts of all our lives, will help to change the general attitude more towards support, inclusion and understanding.

Valerie

June 28, 2012 5:00 p.m.

AS A PERSON DIAGNOSED WITH A.D., I WAS REALLY PLEASED WITH THIS ARTICLE. I AM OPEN AND UP-FRONT ABOUT WHAT WE DEAL WITH AS IT IS EMBARRASSING TO FORGET NAMES AND FACES AS WELL AS NOT ALWAYS BEING ABLE TO PARTICIPATE IN LIVELY CONVERSATIONS. REACTIONS TO OUR SHARING IS MIXED - THE MOST COMMON IS &quot;I WOULD NEVER THINK ANYTHING IS WRONG WITH YOU&quot;. (OF COURSE, THEY DO NOT LIVE WITHIN MY HEAD.) THANK GOD FOR OUR FAITH, OUR MARRIAGE, OUR FAMILY, OUR FRIENDS, MY MEDICATIONS AND THE ALZ. ASSOCIATION FOR THEIR SUPPORT AND ENCOURAGEMENT. I SHALL PRINT OUT THE ARTICLE AND SHARE WITH OUR CHILDREN. (I AM NOT SURE THEY QUITE KNOW WHAT TO DO WITH ME.) AGAIN, THANK YOU FOR THIS POSTING!!

CAROLE

June 28, 2012 4:50 p.m.

Good to see so many well informed people on here...trouble is, it is the uninformed and misinformed that I hope find this and read up! I took my Mom to our geriatric doctor here, who also happened to be the resident doctor at the nearby facility for alzheimers. I was SHOCKED with the amount of new medications that were thrown at us. After doing my research, I decided to try ONE of these drugs. How would anyone know which drug was responsible for causing side effects if we tried 5 new drugs at once?? What good is having a slightly better memory if you are going to be plagued with nausea? And the bill of rights for these patients is excellent, because I do not believe in the heavy &quot;doping&quot; medication that is standard protocol in these memory care facilities. EDUCATE yourself everyone so that you can make the best, most informed decisions for yourself or your loved ones care. NEVER just take all of this at face value.

katy

June 28, 2012 4:40 p.m.

I disagree...I was a only child caregiver for my Mother Ellen and the main caregiver for my wife June...both died within a year of each other from Alzheimer's my mother went 6 years and my wife almost 11 years...I saw no indication of any stigma on the part of anyone we associated with...of course there is a fear...that is not a stigma...my wife initiated her own testing and diagnosis...this stigma baloney has circulated long enough to take on a life of its own...its all nonsense...

Stan

June 28, 2012 3:12 p.m.

My husband is still in the early stage of Alzheimers six years after diagnosis. He immediately began to tell all our friends and family members about the diagnosis. As he says, he'd rather they think his lapses are from Alzheimer's than think he is stupid. He is a very gregarious man who takes our dog for daily walks throughout our subdivision, chatting with everyone who is outside as they pass. They also all know of his disease. I'm quite sure they think differently of Alzheimer's since knowing Ed and seeing the pleasures he still enjoys. Our local
Alzhimer's Association support groups are a huge help in keeping us both focused on all the is positive in our lives and that they will help us cope as the disease progresses. After six years, I can honestly say our lives are different but still very good. Many people with other serious medical diagnoses cannot say as much.

Ann

June 26, 2012 6:50 p.m.

i have more of a question than a comment i have BEEN diagnosed with Alzheimers but NOW MY DR SAYS I HAVE PARKINSONS ALSO.IS THAT EVEN POSSIBLE TO HAVE BOTH CONDITIONS AT THE TIME.I REALLY HOPE SOMEONE CAN ENLIGHTEN ME

lilly

June 26, 2012 7:25 a.m.

Whereas I agree with all you wrote, I think that Alzheimer's myths and misconceptions have already begun to disappear for those in their mid-60s and younger. My wife and I were both born in 1946, the first year of the &quot;baby boomers,&quot; and have spent the last 25 years with internet access. We regard doctors as people with advanced skills in medicine, but certainly not the sole sources of information for us about medical symptoms, diagnoses, and treatments ... and often we seek 2nd and even 3rd opinions. This is a huge change compared to the experience of many in their 70s and older, many of whom view doctors as &quot;gods&quot; who always know what is best for their patients, even in terms of sharing information. By the time my wife was diagnosed with Alzheimer's, I'd already been logging Alzheimer's symptoms for several years due to what I had learned on responsible internet websites, including that of the Mayo Clinic. I took my wife for a second opinion when I was reasonably sure that she had early onset Alzheimer's based upon what I learned from these websites, even though doctors were then (mis)treating her for stress, anxiety, and depression. We boomers are empowered with more knowledge than previous generations. I'm optimistic that most myths and misconceptions about Alzheimer's will disappear as more and more boomers reach their late 50s and 60s when, sadly, they will begin to know more and more friends and loved ones having to confront Alzheimer's and other

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